“Look!” he says.
I emerge from the kitchen into the living room.
“What is it?”
He is sitting in his reading nook, flipping rapidly through pages in the Dark Horse Star Wars Omnibus, collecting the comic book adaptations of all six movies.
He flips quickly to Luke’s run on the Death Star in Episode IV, points at a specific speech bubble in a specific panel, then flips immediately to a scene on Dagobah in Episode V, barely stopping to tap a panel with his finger before flipping all the way back to a scene with Anakin and his mother from Episode I.
I have barely registered what he is pointing at he is flipping so quickly.
I am supposed to understand what I am seeing.
He repeats the sequence twice, so I know that he is not simply flipping and pointing at random. But he does it even more quickly than before, as if working to master a juggling trick, so I have even less opportunity to decode what he is showing me.
He is giddy with delight.
Instead of yelling at my cluelessness (his typical next step in these situations), the next time through he helps me out, speaking aloud the words at which he is pointing.
Episode IV: “Hey”
Episode V: “I just”
Episode I: “met you”
He is recreating the Call Me Maybe Star Wars mashup. Silently, in rhythm, with a book.
Part 1: From Our Family to Yours
Our kid is sweet, smart, and funny. He’s also on the autism spectrum.
All we knew was he was awesome and he was ours.
Key to the boy’s core curriculum—starting from this early age—was an emphasis on social skills. This wasn’t instruction on courtesy or manners; it was something called social pragmatics. A cognitive approach to the kinds of social interactions that come naturally to
most many. Establishing eye contact. Taking turns in conversations. Greeting someone when they enter the room.
And because we loved talking about our child, and because this actually was pretty interesting stuff, we’d share details of what he was learning, and parents of other, “typical” children would say why doesn’t my child get that. My child could use that.
Around this time, too, Christa began blogging about our family and hyperlexia, about echolalia, about invisible disabilities, and about how hard it is to survive a birthday party with an autistic preschooler sometimes.
And so many parents—strangers she’d never met—responded in comments or privately, via email, saying that’s us too. Thank you for helping us realize we’re not alone in this.
We know that many struggle with forms of autism that separate them from the world around them, across chasms of language and awareness. But with who our son is, and how he is in the world, we were discovering new kinds of connection, with other kids, and other families.
And who he is is a little Abed Nadir. Decoding his interactions and relationships in life by referencing dialogue or moments from TV shows and movies that he loves.
And Christa wished out loud for a show that he could draw upon, for context and handy quotations to apply in his normal life, where there were relatively few steam engines, or spooky mysteries to solve, or swordsmen or wizards or Sith lords.
And she would want it to be a comedy. Because long before the word autism entered our house, our family had kept close through laughter.
She imagined that other families might connect to a show like this, too. Those who had diagnoses or labels, as well as those who struggled without them.
And she realized she would have to make it herself.
Continue reading Part 2, in which I share a bit Christa’s journey on the road to Executive Producer.
John Elder Robison has turned advocacy for people with autism into one of his Aspergian special interests. He kicks ass in this interview with Steve Silberman from last May:
One of the things that troubles people about the use of labels like “low-functioning” and “high-functioning” is that people will call a five-year-old kid who can’t talk “low-functioning,” yet a kid who has language skills, like me, but doesn’t have any friends, is described as “high-functioning.” First of all, of those two children, the so-called high-functioning kid is the one who is at material risk for suicide by the time he’s 16. Most people would not call a dead kid highly functional.
I know two families with (non-spectrum) teenage kids who have dropped out of high school because of their inability to adapt themselves into their societally expected roles. The prospect of my “high-functioning” second grader struggling as they have weighs heavy on my heart sometimes.
This is a picture of my father, when he was five years old. The year was 1942.
This is not his school photo, it’s an identification card he received from the United States Army.
My father needed this as proof to demonstrate that he was allowed to remain in California, even as his grandfather was put on a train and sent off to a fenced compound in the Arizona desert.
I am a fourth-generation Japanese-American. And as such, in 1942 I would not have been welcome in the state of California. In April of that year, by law, I too would have had to report for relocation, as they called it.
Here on the left is my great-grandfather, Riusaku Tanimoto, more commonly known as Frank.
Frank emigrated from Japan to the United States at the turn of the century, where he married a Mexican-American woman, Miquela Coz. But after he and Miquela separated, many of the family members went by the last name of Coz.
In April of 1942 Frank was relocated to the Poston camp in Arizona. Because according to the government, these desert camps were where persons of Japanese ancestry in the Western states belonged.
But the Coz children petitioned for an exception, and remarkably, got it. My father, his sister and mother, and his aunts and uncles, were all granted ID cards stating that for them, the provisions of Executive Order 9066 had been suspended.
So my father was allowed to remain in California. Although on days kids called him “Jap” in the schoolyard, it was hard for him to feel that he belonged there.
This is Ernest Coz, my father’s uncle.
When he was drafted, the Army had no way of knowing someone named Coz was of Japanese descent, not until a Basic Training bunkmate found his ID card and turned him in. Once identified, he was shipped off to the 442nd Infantry, because according to the Army, that’s where soldiers of Japanese ancestry belonged.
But this isn’t actually a post about the history of Japanese-Americans in World War II.
It’s about the reason my son has the opportunity to attend the school that he does.
ASIP, the Asperger’s Inclusion Program is part of the Oakland Unified school district’s Programs for Exceptional Children. (PEC is what we grew up calling Special Education.)
In most school districts a child like mine on the spectrum might spend his school day in a classroom dedicated to children with special needs. Oakland’s ASIP program identifies certain such children as capable of participating with some support in a regular school classroom, with typical kids at their own grade level.
For my son the ASIP program is a little like my father’s ID card. It says that—by law—my son is entitled to be where he is.
But the vision of the principal at my son’s school extends far beyond mere compliance to the law. She does not believe in teaching to the test. She believes in fostering the growth of the whole child as a way to build student achievement. And she has adopted the goals of the Caring School Community® Initiative, in which everyone in the community is cared for and respected. In which everyone belongs.
And in which diversity is celebrated. Cultural and ethnic diversity. Economic and gender diversity. And one that’s newer to many people: neurodiversity. In which different kinds of minds are welcomed and celebrated within a community.
Because the goal of diversity isn’t about compliance. It‘s about what we gain from our interaction and participation with each other.
I’ll give you one example of what our school has learned from ASIP.
Part of the ASIP curriculum is a program called Superflex, designed to help children with Asperger’s cope with strong emotions that arise when dealing with other people, especially when things don’t go the way they might like.
As the teachers in the younger grades were introduced to the Superflex concepts and materials, they realized that EVERY kid could use some extra help in navigating these same challenges. And so many of these teachers have adopted Superflex as part of their standard classroom curriculum for the year.
Not everyone is required to be inclusive when it comes to my child.
Some kids will roll their eyes at his mannerisms, or his way of talking, and simply walk away. Some won’t extend an invitation to a playdate or a birthday party.
But those children who do decide to be his friend, who welcome him into their play, who decide that he belongs, are participants in the vision of inclusion within a caring school community. And the challenge for us as educators and parents is to foster that environment, where everyone belongs.
When we stop at the donut shop the boy prefers to get a sugar-raised donut and a carton of milk.
At home, at school, everywhere he goes, the boy prefers one thing or another, typically the thing that is the same as the last time, or that one time, or every other time before.
Repetition, familiarity, predictability, sameness, all create a zone of safety for an individual on the spectrum.
They also create ruts. Walls separating the individual from growth.
It is the role (some might say responsibility) of an ASD individual’s loved ones to disrupt the routines from time to time. To create moments of tiny chaos, that challenge them to tune into their surroundings.
Like when Grandpa asked him to share some of his donut.
Sometimes these disruptions can trigger the shouting. (Again, with the shouting.)
But sometimes, when introduced by someone close, the chaos can be created within a safety zone of its own. And the response can be confusion, instead of anger. An opportunity for a moment of give and take.
“What did you say?”
“I asked if I could have some of your donut.”
Sometimes the boy will assert himself, and state a desire to stick to his routine.
“Well, I don’t want to hurt your feelings, but… you can get your own donut.”
Acknowledging another person might not like his answer.
That is not a part of his routine.